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Hi lupus support group! Your friend has sent you the following story. http://www.northbay.com/lifestyle/general/16lupus_d1.html

Hi, friends. Thought you would find this interesting

and wonderful that it is getting such a great spread,

even if it is local to my area in no. CA. hugs, MM

'Lupus is my story' Young woman tells of her struggles with lupus through lens of her own camera February 16, 2003By MEG McCONAHEY THE PRESS DEMOCRAT

Lying in her high, dorm-style bed surrounded by posters and pictures of friends partying at college, Genevieve Alvarez opens her wide brown eyes each morning and regards her fingers.

She knows precisely what kind of day it will be by consulting her hands.

If she sees her slim artist fingers -- tapering skin over the fine definition of bone -- it will be "a good day." She'll slip down to the floor and throw on her clothes.

But if the fingers are soft and puffy like half-baked cookie dough, it will be "a bad day," spent motionless on her mattress at least until noon, the most inconsequential movement punishing her with a pain akin to "glass grinding" in her swollen joints.

Those hands are as clear an indicator of the quality of her day as a rain-splattered window that portends the weather. And it was catching a reflection of her hands -- and the rest of her 21-year-old body so compromised by a mystery disease many of her fellow Santa Junior College students have never heard of -- that prompted Alvarez to tell her own story in pictures.

A one-time athlete at Ursuline High, excelling at soccer, basketball and softball -- Alvarez has been slowed from a sprint to a shuffle by lupus, an autoimmune disease in which the immune system attacks itself -- normal healthy cells, tissues and even body organs. It's unpredictable, tough to diagnose and often brings extreme fatigue, hair loss, kidney dysfunction and arthritis.

Research indicates there is a genetic predisposition to lupus.

Some 1.4 million Americans have been diagnosed with the disease in varying forms from very mild to severe. Ninety percent are female, and it is most common among minority women -- Asian, black and, like Alvarez, Latina.

With medication, the symptoms of lupus may be lessened or, in a very few cases, brought into remission.

Forced to drop out of a grueling animation program at Loyola-mount University in Los Angeles, Alvarez came home to Santa a year ago to try to recover her health and shift her artistic perspective from canvas to camera.

Autonomic function

Alvarez is an artist for whom drawing, she says, is an autonomic function, like breathing.

"I draw myself into everything I do," she explains, producing a notebook that is her visual diary, filled with caricatures and sketches of herself in surrealistic situations, fraught with symbolism. "Art is my way of talking to the world."

So turning her camera on herself was a natural response when she was assigned an art photography class project last year in which students were told to tell a story in five frames.

At first, she concocted a roaring '20s murder mystery, with an enigmatic heroine clad in black and crying over a lost love. She donned a costume and began experimenting in the mirror.

"The more I looked at myself ... The more I began to see just me, without the murder mystery and costumes. Just me, unplugged. I asked, 'What is my story?' Lupus is my story. It became a different 'heroine' story," she says.

Her own loss has meant letting go of her old dream of animation and embracing a new goal of getting well enough to transfer to School of Photography in Santa Barbara. It's also meant letting go of that old girl who could survive on coffee and no sleep and win high grades while still squeezing in wild nights drinking beer with buddies.

Now her evenings are spent watching videos with her mother, whom she describes as her best friend and support system.

Drawn back

In the fall, Alvarez developed her artistic, five-frame story into a longer photo essay for a photojournalism class. Again, she first set out to do something else -- a feature on a tattoo parlor she figured would lead to some "cool" pictures.

But again, she was drawn back to her own world of pain and recovery, where, as she explains, "every single joint in your body feels like it's connected by a piece of glass, from your toes to your fingers to your jaw." It hurts even to yawn.

She sees her photo story as a little window to her world at home -- a side of her life unseen by the classmates who may know her only as the girl who smiles frequently, has an off-the-wall sense of humor and who lugs around her vintage Canon AE-1 camera like an appendage.

"I don't think a lot of people know about lupus. I didn't know about it until I had it," she says. "I don't want to be another charity. But I didn't realize how many people in America, and all over the world, have lupus right now.

Alvarez is not self-pitying. Beneath her soft-spoken good-girl demeanor burns a rebellious streak tempered by a gentle sense of humor about the disease that has shifted her world.

"This is me walking on a bad day," she says with a grin. "Like Ozzy, from the Osbournes."

She hunches her shoulders and shuffles across the living room floor in pink bunny slippers, her preferred footwear at home because "socks are evil."

On a bad day, the intricate motions of bending over, grasping and then pulling up socks over swollen feet and calves is excruciating. Bad days are spent sockless.

Rheumatoid arthritis

But her story begins with her hands. The instruments of her art, they now betray her with rheumatoid arthritis. The swelling and pain make it tough to hold a pencil for the long hours it takes to produce the hundreds of drawings that go into even a short animation sequence.

That, coupled with the constant exhaustion, massive hair loss, bloody noses and other confounding symptoms of lupus, forced her to abandon her major.

The camera has become an alternative medium, easier to manipulate and less labor intensive at a time when fatigue dogs her constantly.

There are days when she wakes up dead tired. Setting up a tripod on a ladder over her bed, she framed the first shot of her day and dispatched her mother to trip the self-timer, capturing the moment of waking up to "a bad day."

If she manages to get out of bed hours later, showers bring disappointment. Before lupus, her signature feature was her hair.

"Big Mexican girl hair," she remembers dramatically, laughing and air-tossing an imaginary and glorious, down-the-back black mane that over two years has vanished follicle by follicle down the drain.

Now she washes her hair only every three days, knowing each shampoo will bring her closer to shopping for wigs.

On bad days, she needs her mother to help her get dressed. The irony brings on bittersweet laughter.

This June she would have graduated with her friends from Loyola and launched her career. Instead, she's retreated to little girl's dependence on her mother and a regimen of pills.

The young woman gazing through a window, contemplating forced change and what she left behind, is not, however, fixing her lens on loss.

Her life has slowed, but that has brought a quality and a clarity to each frame of her day. She draws an analogy from animation.

The average animation, she explains, runs at two frames per drawing, meaning a single drawing is held on screen for two frames, or 12 drawings for one second of animation. In animation slang, she says, "we call it "on twos."

Choppier, low-quality animation is "on threes" or "on fours." But the "cleanest, most fluid, sexiest animation," she says, is one drawing per frame, or 24 drawings per second. Hence, "on ones."

Now that she's forced to execute every motion slowly and deliberately, her old animation friends have reminded her that she's living life "on ones now." And that, she knows, is a compliment.

You can reach Meg McConahey at 521-5204 or mmcconahey@....